Adventures of Car-T Cell

Our last update was in May of 2022, just after Emily’s long awaited and well overdue liver biopsy. This was something we had been pushing for, for over a year. The results revealed that Emily has a third form of cancer, a large B-cell lymphoma. With this additional diagnosis, we were excited to start a new six-month chemo regimen to knock out her liver mass. After the first 2 months of this new chemo treatment, she had another PET scan which showed a dramatic reduction in the size of her liver tumor! It went from the size of a grapefruit to the size of a grape. We finally had a feeling of peace and reassurance that we were on the right track to eliminating this damn liver tumor once and for all.

We carried on a happy life for the next couple months, playing on our new zipline in the backyard and spending our weekends with our bestie, Amanda. As we approached the date for Emily’s post treatment follow-up PET scan to check the status of her liver, we were hopeful and optimistic that the tumor would be completely gone. When we got the results of the scan it showed that the tumor had become resistant to the chemo and had grown back to the size of a grapefruit just as fast as it shrunken down when treatment first started. This news was devastating, to say the least, as this was the second aggressive chemo regimen that had failed to get the liver mass under control.

Fortunately, Emily has remained under the care of the UCSF Neuro-Oncology where they have all the cutting-edge treatment and technology. They were quick to formulate a new plan for her. They offered her the opportunity to try a new treatment called Car-T cell therapy where they take her own T cells (white blood cells) and engineer them in a lab to turn them into specialized cancer killing T cells. We were so happy for Emily to have the opportunity for this treatment because if it worked, it would mean NO MORE CHEMO for Emily! The Car-T cells become part of the immune system and have the ability to regenerate and continue to eliminate cancer! However, in order to be eligible for this treatment plan, we had to be willing to relocate our lives to San Francisco for an entire month. This was a big commitment for Emily and our family to take on, but if it meant that she would not need chemo anymore, she was ready to take it on just like she has with everything else and we were ready to support her!

Then, unfortunately, we were back to the old “hurry up and wait” routine which we have become very well accustomed to. It seems like we are always waiting for insurance approval and also, Emily had to wait for the chemo to work its way out of her system before her T-cells could be harvested. The T-cell collection was rough, not because of the process itself, but because of the high flow double catheter they had to insert into her neck. This was done the night before the extraction in order to harvest the T-cells while simultaneously returning the rest of her blood to her body. When she checked in for the catheter placement, they told her it would be a little uncomfortable and it might feel like sleeping with an animal on her neck and that she would be aware of it and would subsequently not move around as much as normal.

Well, there was no sleep for Emily that night. She was in severe pain and it was not just her neck that hurt as her heart did not feel right. After the long sleepless night and the T-cell collection the following day the nurse removed the catheter and said, “Huh, they are not normally bent like this.” Then he explained how it goes in a big vein in her neck and is threaded deep down so the tip ends up near her heart. The bent tip was constantly scratching the inside of her vessel where it opens up into her heart. It was no wonder she was in so much pain, oh and it was the thickness of a pencil (pictures will be posted).

Once collected, it took four weeks for the cells to be genetically engineered in the lab. During this long waiting period, Emily had to undergo more chemo in an attempt to slow the growth of the lymphoma. So, back at home we patiently waited for the Car-T cells to be made as Emily endured more chemo and all the challenges that come along with it. During this time, we prepared for our one month stay in San Francisco where we would have to monitor Emily closely for potential serious and life-threatening side-effects which sometimes occur after they infuse the Car-T cells back into a patient’s body and they begin to acclimate to the foreign Car-T cells. These side effects include neurotoxicity leading to confusion, seizures, coma, and worse. These side-effects were a big concern for her oncology team due to her complex history with brain cancer, recent surgery, and seizures. But to our great appreciation, even with the risks involved, her neuro-oncologist and her lymphoma oncologist agreed to let Emily do it!

Around the time that the T-cells were expected to be ready, Emily had to do one more brain MRI to check the status of her Glioblastoma (brain cancer). We were pleased to learn that there was NO NEW GROWTH and things looked stable! Her neuro-oncologist, once again, gave her the green light to go ahead with the Car-T cell treatment. We are so grateful for this amazing neuro-oncologist and the whole multidisciplinary team at UCSF for making this possible. Soon after this news we learned that there was a delay in the Car-T cell production and Emily had to wait a week or so longer than expected. At this point her liver tumor was causing her a great deal of pain. It was becoming debilitating, so she had to undergo another dose of chemo to tie her over while she waited out the delay.

Then, once the Car-T cells were ready we finally got the phone call that the Car-T cells were ready and UCSF had a room ready for her at the hospital! We were fortunate enough to get a two-bedroom hotel room, so Ivy and Ivan could come visit us on the weekends after Emily’s initial eight day stay in the hospital. During our waiting period we really enjoyed our time talking about and planning for fun things to do once they were able to come visit. Now with the green light from UCSF, we packed up our stuff and hugged the kids goodbye and headed for San Francisco.

 We checked into the hospital with a tray full of Emily’s homemade cake balls and Ivy’s handmade daisy awards to gift to the nurses for whom we have such a deep respect for. On September 13th, Emily got her Car-T cells infused into her system. The first few days of the hospital stay were rather uneventful aside from Emily having a hard time sleeping and eating. It's hard to sleep in the hospital when they wake you up every four hours to ask you questions, check your vitals, and take your blood. We explained to the doctors that she normally takes a high dose of THC at bedtime at home. Since she wasn’t allowed to take some of her outside prescriptions in the hospital it was disrupting her sleep routine. The doctor offered her Marynol which is a synthetic THC that they have in the hospital and she gave her the highest dose available due to her tolerance.

Soon after taking the Marynol Emily got hungry and ate a bunch of ice cream! Great success, she's eating! After dinner as we were chilling and watching TV the Marynol started to make her feel a little more medicated than we expected, this was a little unsettling because the nurses were monitoring her for signs of neurotoxicity and she was hesitant to tell the nurses how she was feeling because she didn't want them to falsely assume it was neurotoxicity. We talked about being honest with the nurses no matter what and Emily decided to call them in to tell them how she was feeling. As the nurse came in Emily was kind of shy and so the nurse got really close to her and Emily looked her straight in the eye and said, “Um. I'm high as f@#ck.” The nurse was very professional and comforted her very appropriately in the moment, but over the next few days and still even now we all have a lot of good laughs about it.

On Tuesday Sept 20th after eight days in the Blood/Marrow Transplant Unit in the hospital getting poked and evaluated every four hours, Emily had passed all her blood tests and neuro exams and we were free to discharge from the hospital. It appeared that Emily’s body had accepted the new blood cells well and they were now part of her immune system. We settled into our hotel room near UCSF to finish out the post treatment observation period. We were so happy to be out of the hospital and so happy that Emily had acclimated to the new blood cells without serious complications. This was a bittersweet feeling for both of us, as we were happy to be in a hotel where we could turn the lights off at night and be comfortable and eat better food, but we were away from the safety net of the hospital environment and staff.

The first week at the hotel went well. We checked in with the blood/marrow transplant team at the hospital every other day and her body proved to be responding to the new Car-T cells just as well as we hoped for, and her liver pain was slowly starting to subside! We enjoyed short walks around the little marina that our hotel was on and just relaxed in the room and planned our weekend when Ivy and Ivan would come visit. The first weekend came and Ivy, Ivan, Amanda, and Grammie came to visit! This was the best feeling ever after what Emily had just gone through. To have the family together felt like we were home. On that Saturday, we had a wonderful adventure in Pacifica, CA just south of San Francisco where they have a Taco Bell on the beach! We enjoyed our lunch on the sand and socialized with some birds, lots of dogs, and some friendly people too. Emily always thrives after any form of animal therapy, so the dogs and birds were an extra special bonus!  

After lunch we wandered up the coast in search of tide pools. We met a bunch of beach squirrels as they were getting fed by an elderly couple. Grammie saw some whales and we even got in on a random photo shoot with Kermitt the frog on the beach! We wrapped up our day with a door dash dinner in the hotel and a movie night with ice cream. We were all living our best life and our dreams of visiting the Taco Bell on the beach was fulfilled and was even better than we could have dreamt of!

The next morning, we enjoyed a little breakfast in the hotel lobby followed by some coffee “peace time” in the hotel room. This was such a pleasant feeling after such a good but busy weekend. Just relaxing and enjoying coffee and chocolate milk together made us feel almost normal again for a moment. Then, as we were enjoying our quiet peaceful time on the couch, Grammie noticed that something was not right with Emily and she called out for help. I could hear Emily yawning and as I turned my head toward her I saw that she was in a state of seizing.... this just goes to show how quickly things can change without a second of warning. Grammie and I were able to help Emily onto her side while Amanda and the kids were able to get the anti-seizure medicine. After the grand mal part of the seizure subsided, Ivy and Ivan were able to sit with Emily and talk to her and comfort her as she regained consciousness. What a traumatic thing for the kids to have to go through, but these are tough kids we are dealing with here and unfortunately this was not their first rodeo.

As Emily regained consciousness Grammie and the kids were telling her that she had a seizure and it was news to her. She was quickly back on her feet walking around like nothing happened. This was a wonderful and reassuring sight to see after such an aggressive neuro-electrical malfunction. As we were happy to see Emily fully conscious with no apparent neurological damage from the event, we still needed to get her into the hospital for evaluation and care. We quickly assembled a plan and as Emily got dressed and ready to go Grammie, Amanda and the kids started loading up the car with all Emily's luggage and medical equipment. I can't tell you how proud I am of these kids for being able to stay calm and not only comfort their mom, but also act as first responders to get her loaded up and to the hospital safely.

As the tiny team was loading up the car and Emily was drinking water on the couch getting ready for the hospital trip, she was putting her cup on the coffee table when a second seizure instantly took over her body and mind. I was able to help her to the floor and get her more medication and comfort her while this horrible phenomenon took its toll on her. As Ivan showed up through the propped open hotel door he asked “did it happen again?” I told him yes and once again, despite the tragic looking scene with mom on the floor, he kept calm and was able to assist as Ivy, Grammie and Amanda followed in shortly. We went from one seizure event with what seemed to be a full recovery, to this. Once again, we were able to quickly develop a plan to get Emily a wheelchair and safely load her up in the car and then, away we went, back to UCSF.

With Emily riding shotgun, Amanda in the back seat and Grammie, Ivy and Ivan in the car behind us, we navigated her through the streets of San Francisco to get her to the #1 hospital in the country for neurology. Emily slowly regained consciousness on the ride there and was able to walk into the ER with Amanda on one arm and me on the other. After we checked in Amanda, parked the car and met up with the rest of the team and patiently waited as Emily and I went through the seemingly slow process of ER triage and admission. After meeting with a bunch of neurologists and finally getting Emily in a room with a nurse to take care of her, I was able to leave Emily long enough to meet with the tiny team and get the car keys from them, so they could head home to return to school and work the following day.

As I met them in the waiting room, I was overcome with an instant sense of relief. Not only was Emily OK and in a safe environment, but the kids were OK too, and they were in a safe environment with two amazing people who love them. They were playing games with Grammie and Amanda and making the best of such a f%@ked up situation. Again, I am overwhelmed with gratitude that despite the trauma we all went through on this day, we were together and the kids didn't have to hear this news from a hundred miles away. The kids were able to see for the first time the hospital where Emily went through brain surgery 18 months ago and so many other procedures since then. I hope that this helps them put a place to the name and helps them settle some of the uncertainties in their imaginations.

After three days in the Neuro-ICU and all sorts of test and procedures, the neurology team, the blood/marrow transplant team, and Emily’s neuro-oncologist came to the conclusion that the seizures were not due to neurotoxicity, but were actually breakthrough seizures due to her seizure threshold being lower during this peak time of her body's immune system restructuring itself. As messed up as it sounds, this was the best-case scenario and was good news to us. We were thankful that the seizures weren’t caused by neurotoxicity or new brain tumor activity.

Once again, we were discharged from the hospital and we returned to the hotel. Like before, this was bittersweet because we enjoyed the comfort and privacy of the hotel room, but we missed the safe and secure feeling of being in the hospital environment with the nurses and doctors close by. As we settled back into the hotel on Wednesday September 28th, Emily noticed that her liver pain was completely gone, yay! We had a double victory; no neurotoxicity and it was also apparent that Emily's new genetically engineered immune system was winning the battle against her liver tumor! Whew! As we regrouped ourselves and planned the rest of our stay in San Francisco, we were hesitant to have the kids visit again due to the added stress of what happened the weekend before.

Upon discussing it with Ivy and Ivan, they decided that they wanted to visit every weekend no matter what! This choice of theirs showed me what I already knew, that these kids have developed a very strong sense of resilience and nothing, absolutely nothing, would stand in their way of spending time with their parents and showing their everlasting support to their mom. The kids did just what they said, they visited every weekend and it made our long stay feel not so long. On the last weekend of our extended stay, Sunday Oct 9th, as the kids were loading up to return home after visiting, Emily noticed her liver pain was coming back and triggering some referred pain in her right shoulder. As we tried to stay positive, we realized that this was not a good sign. On Wednesday Oct 12th, just 30 days from her Car-T cell infusion, Emily did her follow up PET scan to check the status of her liver mass. Then we packed our bags and headed back home to wait for the results. This was another bittersweet moment because we were finally able to come home, but we were worried and wondering why, after such a dramatic improvement in Emily's liver pain, would the liver pain be coming back? Regardless of our worries, it was so good to be back in our home sweet home, together as a family.

The following day Emily's oncologist called us in for an urgent zoom meeting to tell us that the results from the PET scan showed the liver tumor was growing back and Emily would have to do another liver biopsy to find out what was going on. On Wednesday Oct 19th we headed back to San Francisco for a one-day trip, so they could take a tissue sample from Emily's liver once again. As disappointing as this was, we were once again so grateful to be under such good care at UCSF. We were thankful that they were able to act so proactively and get the biopsy done so quickly.

As we waited at home for the results of the biopsy, Emily’s liver pain steadily got worse and worse. On Friday Oct 28th at 4:30pm Emily's oncologist called with the results from the biopsy. We were told that cancer cells were fighting back against the Car-T cells at a cellular level and the cancer was/is progressing. However, since we had evidence that the Car-T cells were effective in the beginning, he devised a plan to give Emily an IV antibody along with a cell-gene medication that can potentially boost the Car-T cells and get them back to actively fighting the cancer cells. It was great news to hear that he already had a plan. Although, since it was a Friday at 4:30, we had to wait over the weekend before they could order the treatment. We carried on and even though Emily was in a lot of pain, she did her best to enjoy the Halloween weekend.

As Monday came around, we learned that the medicine had been promptly ordered by the local oncologist and at this point we felt like Emily would be getting her treatment within a few short days. Unfortunately, this was not the case as two weeks have gone by and Emily has still not received the treatment that she so urgently needs. To this day, I'm sad to share that Emily is suffering a great deal with her symptoms getting progressively and rapidly worse. Her treatments are all there and ready for her, but due to the brokenness of our healthcare system, she deteriorates here at home because of insurance battles. That's right, despite Emily's critical condition she is not getting the treatment she desperately needs and deserves because the health insurance company refuses to recognize her urgent needs. And so, once again, Emily waits and waits and waits...

~ Ben (Lou) Lambert aka Emily’s Loving & Devoted Husband